Osteoporosis Medications And Celiacs

[cahill]

I have been away from these forums for awhile . When this issue came up I decided to come back to these forums looking for help from those who I knew would understand .

 

 

I am 58 years old , a diagnosed celiac ,I was diagnosised with  osteoporosis 8 years ago. 

The past few times my doc mentioned osteoporosis meds I blew it off,, thinking I had time ,,but now I am not sure I have time to delay any longer.

I have two compression fractures in my spine , the origin being my osteoporosis.

 

My DEXA scan is in Feb and then a follow up after with my doc, pretty sure the main topic of that visit is going to be medications for my osteoporosis ..

 

Those of you dealing with this issue ,,how are you managing your osteoporosis ??medications??

[cyclinglady]

I was 51 when I was diagnosed with celiac disease. Two months later, I suffered two vertabrae fractures (T7 and T9) doing nothing! Bone scan revealed osteopenia (just one point shy of osteoporosis) but per my GP, a fracture bumps up my diagnosis to Osteoporosis. Since I was within months of passing through menopause, I went back on HRT with the intent to build bone. I also walked and exercised every single day. After a year, my new GP wanted me off HRT, so I ceased. My back is healed. I no longer have rib and hip pain while sleeping my my side. I am running, biking and swimming. I lift small weights and practice my balance (to avoid falls). I take some calcium supplements containing Vitamin D, zinc and magnesium, but I have really slacked off. I work harder at getting all my nutritional needs through whole foods that are varied. My blood tests indicate that I am no longer deficient in anything.

I am putting off meds for as long as possible. My research has indicated that the meds do a good job of building bone, but it is built on a poor foundation. Spontaneous fractures are a side effect of the drugs. It is always my luck that I react to drugs! Heck, I am severely allergic to aspirin!

I am staying med free for as long as possible. My follow-up bone scan will be in July (two years). I think I am building bone. I hope I am!

[cahill]

I was 51 when I was diagnosed with celiac disease. Two months later, I suffered two vertabrae fractures (T7 and T9) doing nothing! Bone scan revealed osteopenia (just one point shy of osteoporosis) but per my GP, a fracture bumps up my diagnosis to Osteoporosis. Since I was within months of passing through menopause, I went back on HRT with the intent to build bone. I also walked and exercised every single day. After a year, my new GP wanted me off HRT, so I ceased. My back is healed. I no longer have rib and hip pain while sleeping my my side. I am running, biking and swimming. I lift small weights and practice my balance (to avoid falls). I take some calcium supplements containing Vitamin D, zinc and magnesium, but I have really slacked off. I work harder at getting all my nutritional needs through whole foods that are varied. My blood tests indicate that I am no longer deficient in anything.

I am putting off meds for as long as possible. My research has indicated that the meds do a good job of building bone, but it is built on a poor foundation. Spontaneous fractures are a side effect of the drugs. It is always my luck that I react to drugs! Heck, I am severely allergic to aspirin!

I am staying med free for as long as possible. My follow-up bone scan will be in July (two years). I think I am building bone. I hope I am!

I also was trying to stay off the osteoporosis meds as long as possible, but I am seriously considering them now

My DEXA scan is coming up soon and if my score had changed significantly ( in the wrong direction ) I will strongly consider the meds

[cahill]

.

[mamaw]

I have osteopenia & have tried the drugs which made me ill & then all the reasons cyclinglady gave .....I take natural forms of bone builders & have stayed okay... I do need to add much more exercise. My mother's doctor almost forced her to take these drugs then all she did was have fractures & jaw problems.....

[cyclinglady]

Are you taking all the necessary supplements? Are you actually lifting weights? If not, I would give that another go before trying the drugs.

My fractures were way worse than my both my celiac disease and diabetes diagnosis. Besides being painful, I was frightened at the loss of mobility. I am very active and love riding my bike. The only time I stayed off my bike was when I was pregnant or recovering from surgery. But there was always an end in sight. I knew that I would get back on my bike. I also know that I will not be riding in my eighties, but by then I will be happy to let it go then but not in my 50's. I am not a racer. I just have a fantastic group of riding buddies and I would hate to give that up. With osteoporosis, I was afraid of getting more fractures. My back healed and my fear of additonal fractures went away.

If you detest lifting weighs, then interview a trainer. A trainer may help inspire you. It all depends on how driven you are. I have a bad shoulder and knee. The Ortho doc told me 20 years ago to exercise FOREVER to keep the muscles surrounding my shoulder and knee strong or I would be facing surgery. I saw that option was not very effective in friends and acquaintances ( though they stopped exercising after physical therapy). So, I continue to work my shoulder and knee by running, riding, walking and swimming. I do hate weights but it is a necessary evil. I use just little hand weights as I detest the gym. My purse is a backpack and I wear that stuffed with all kinds of Mom stuff. The weight, evenly distributed is a little workout for my back. I wear a day pack when hiking too.

All these little things add up! Of course the proof will be in my next scan, but I can say that I have not suffered anymore fractures in the past year and a half and the rib and hip pain is gone. That surely must be a clue that I am building bone!

Have your scans since your DX eight years ago been getting worse?

[cahill]

Are you taking all the necessary supplements? Are you actually lifting weights? If not, I would give that another go before trying the drugs.

My fractures were way worse than my both my celiac disease and diabetes diagnosis. Besides being painful, I was frightened at the loss of mobility. I am very active and love riding my bike. The only time I stayed off my bike was when I was pregnant or recovering from surgery. But there was always an end in sight. I knew that I would get back on my bike. I also know that I will not be riding in my eighties, but by then I will be happy to let it go then but not in my 50's. I am not a racer. I just have a fantastic group of riding buddies and I would hate to give that up. With osteoporosis, I was afraid of getting more fractures. My back healed and my fear of additonal fractures went away.

If you detest lifting weighs, then interview a trainer. A trainer may help inspire you. It all depends on how driven you are. I have a bad shoulder and knee. The Ortho doc told me 20 years ago to exercise FOREVER to keep the muscles surrounding my shoulder and knee strong or I would be facing surgery. I saw that option was not very effective in friends and acquaintances ( though they stopped exercising after physical therapy). So, I continue to work my shoulder and knee by running, riding, walking and swimming. I do hate weights but it is a necessary evil. I use just little hand weights as I detest the gym. My purse is a backpack and I wear that stuffed with all kinds of Mom stuff. The weight, evenly distributed is a little workout for my back. I wear a day pack when hiking too.

All these little things add up! Of course the proof will be in my next scan, but I can say that I have not suffered anymore fractures in the past year and a half and the rib and hip pain is gone. That surely must be a clue that I am building bone!

Have your scans since your DX eight years ago been getting worse?

I have had scans every two years since my diagnosis , they have been slowly & steadily getting worse .

 

Until last year when my knee replacement took me out of the gym I have lifted weights . Back in my twentys when every one else was doing aerobics ,I was the girl in the corner with the free weights. Milestones for me were when I could press ( leg) twice my body weigh or press ( chest ) my body weight . Love weight training , biking is ok , walking /hiking is great ( pre knee issues ) . Running does not happen unless something big and bad is chasing me

I am on the necessary supplements , most of my vitamin   and mineral levels are ok  Vitamin D ( finally !! is above 30) at 33

 

My MRI showed the compression fractures ( as did the x-rays) and some bulging of the discs( not enough to require surgery currently ) . I am being sent to a pain management clinic for the back  pain

[cyclinglady]

Ah, perhaps it is time for the meds. Let's see if others respond with positive reviews of a specific drug.

[cahill]

Ah, perhaps it is time for the meds. Let's see if others respond with positive reviews of a specific drug.

Thanks Cyclinglady I do appreciate your input and I agree it is best to stay off the meds as long as possible ,,I have truly fought to stay off the meds but  it may be time

 

I am hoping to get some input about meds that work and are tolerated by celiacs

[cahill]

I am  not sure of  the rules about posting this information so mod's let me know if I need to delete it   The following information is from  a publication from the National Institute of Arthritis and Musculature and Skin Diseases   ( link available on request )

 

  The Link Between Celiac Disease and Osteoporosis

Osteoporosis is a complication of untreated celiac disease. The small intestine is responsible for absorbing important nutrients, such as calcium. Calcium is essential for building and maintaining healthy bones. Even people with celiac disease who consume enough calcium are deficient in this nutrient. And because calcium is needed to keep bones healthy, low bone density is common in both children and adults with untreated and newly diagnosed celiac disease.

Osteoporosis Management Strategies

When people with celiac disease eliminate foods containing gluten from their diet, normal absorption of nutrients from the intestines is usually restored within a few months, although it may take up to 2 years in older adults. Eventually, most children and adults have significant improvements in bone density.

People with celiac disease who have successfully adopted a gluten-free diet also need to follow the same basic strategies for bone health that apply to others who don’t have the disease. These strategies include getting adequate calcium and vitamin D, performing weight-bearing exercise, not smoking, and avoiding excessive use of alcohol. In some cases, an osteoporosis treatment medication may be recommended.

A small percentage of people with celiac disease do not improve on a gluten-free diet. These people often have severely damaged intestines that cannot heal and may need to receive intravenous nutrition supplements.

Nutrition. A well-balanced diet rich in calcium and vitamin D is important for healthy bones. Good sources of calcium include low-fat dairy products; dark green, leafy vegetables; and calcium-fortified foods and beverages. Supplements can help ensure that the calcium requirement is met each day, especially in people with a proven milk allergy. The Institute of Medicine recommends a daily calcium intake of 1,000 mg (milligrams) for men and women up to age 50. Women over age 50 and men over age 70 should increase their intake to 1,200 mg daily.

Vitamin D plays an important role in calcium absorption and bone health. Food sources of vitamin D include egg yolks, saltwater fish, and liver. Older individuals—especially those who are housebound, live in northern climates, or use sunscreen—are often deficient in this vitamin and may need vitamin D supplements to achieve the recommended intake of 600 to 800 IU (International Units) each day.

Exercise. Like muscle, bone is living tissue that responds to exercise by becoming stronger. The best kind of activity for your bones is weight-bearing exercise that forces you to work against gravity. Some examples include walking, climbing stairs, weight training, and dancing. These and other types of exercise also strengthen muscles that support bone, enhance balance and flexibility, and preserve joint mobility, all of which help reduce the likelihood of falling and breaking a bone, especially among older people.

Healthy lifestyle. Smoking is bad for bones as well as the heart and lungs. Women who smoke tend to go through menopause earlier, resulting in earlier reduction in levels of the bone-preserving hormone estrogen and triggering earlier bone loss. In addition, smokers may absorb less calcium from their diets. Alcohol also can have a negative effect on bone health. Those who drink heavily are more prone to bone loss and fracture, because of both poor nutrition and increased risk of falling.

Bone density test. A bone mineral density (BMD) test measures bone density in various sites of the body. This safe and painless test usually can detect osteoporosis before a fracture occurs and predict one’s chances of fracturing in the future. Adults with celiac disease should talk to their doctors about whether they might be candidates for a BMD test. The test can help determine whether medication should be considered. A BMD test also can be used to monitor the effects of an osteoporosis treatment program.

Medication. Several medications are available to prevent and treat osteoporosis, including: bisphosphonates; estrogen agonists/antagonists (also called selective estrogen receptor modulators or SERMS); calcitonin; parathyroid hormone; estrogen therapy; hormone therapy; and a recently approved RANK ligand (RANKL) inhibitor.

[cyclinglady]

So, have you had another endoscopy to prove that you have had intestinal healing? There must be a reason why you are not building bone. Something other than blaming celiac disease or post menopause.

[cahill]

So, have you had another endoscopy to prove that you have had intestinal healing? There must be a reason why you are not building bone. Something other than blaming celiac disease or post menopause.

No I have not had a recent endoscopy. I am super sensitive so it still may be an issue but as I said my vitamins and minerals levels  are pretty good .

I do blame the combination  of being undiagnosed (celiacs) for very long time ( probably my entire adult life 

)and being 33 years post menopausal  . I am currently 58 and I was 25 when I had a surgery that put me into menopause 

[Gemini]

I have some information at work on my computer regarding the different meds and any side effects they may have. I am in your boat with osteoporosis and just do weight training to combat it. It has not improved but I have halted the progression with the exercise. I am 55 years old and post menopausal by 10 years.

We are getting buried in multiple snowstorms but I think I may be going into work tomorrow so I will look for that article and post as soon as I can.

[cahill]

I have some information at work on my computer regarding the different meds and any side effects they may have. I am in your boat with osteoporosis and just do weight training to combat it. It has not improved but I have halted the progression with the exercise. I am 55 years old and post menopausal by 10 years.

We are getting buried in multiple snowstorms but I think I may be going into work tomorrow so I will look for that article and post as soon as I can.

Thank you Gemini

[cyclinglady]

I know that being post menopausal and not being diagnosed with celiac disease for decades does cause bone damage. I did not mean to sound flippant (and if I did, I apologize). It just that I have been anemic all my life and docs just blamed it on my just beIng a woman!

I just think there must be something else that prevented you from building or at least maintaining bone loss.

[cahill]

I know that being post menopausal and not being diagnosed with celiac disease for decades does cause bone damage. I did not mean to sound flippant (and if I did, I apologize). It just that I have been anemic all my life and docs just blamed it on my just beIng a woman!

I just think there must be something else that prevented you from building or at least maintaining bone loss.

You did not sound flippant ,, you sound like you are trying to help and I appreciate that

 

I am not sure if my diabetes ( controlled ) or my hashimoto's  ( receiving treatment ) would play a part or not

[Gemini]

Open Original Shared Link

 

This is one of my favorite articles on bones.  Pretty good information, even though it can be depressing reading about it because I know it pertains to me.  I admit I am not one to track exactly how much calcium I am eating and taking via supplements, but consciously think to add calcium at every meal.  I do take supplements also....good ones I chew because I think I absorb better with chewables. It becomes daunting to be so aware of what I put in my mouth at every meal....not like I don't have enough to do with full time work and all the exercise required to build bone and muscle.

 

I did read another article by Dr. Christian Northrup about bone density and she offered some common sense advice about the fact that bone density testing does not tell you the quality of the bone that you already have, which is kind of important. To put it in perspective, she adds that the bone density of a bird is fragile but it is enough to support their weight.  Not everyone with lower bone density is in grave danger of having fractures all the time but at what point does it become a concern for each person?  My T score is -2.6 in my hip and the spine a lttle better but I have never fractured anything except my baby toe.  I exercise and stuff kale and all those other bone builders down my throat so what more can I do except go on meds that may cause long bone fractures when I am older?  Great choice we have, huh?

 

I think the biggest hurdle for me is that I weight in at 112 pounds.  Women need to sustain a weight of 126 pounds or more to build bone on their own without doing anything else.  My whole Celiac life I weighed between 95-105 pounds so I doubt I ever achieved good bone density.  It is highly unlikely I will ever be able to gain another 14 pounds nor do I want to.  That would mean replacing my wardrobe AGAIN. 

 

I don't know what the answer is, cahill, but I think that diabetes and thyroid disease will affect bone mass.  They are diseases that result in hormone difficiencies and hormones play a role in bone building.  I have Hashi's also.  I feel your pain as I have refused meds and my doc actually does not want me to go on them yet as she is concerned that at my age, it is too early to take them and I might have side effects from the drugs down the road.  She is pleased I have halted the progression and my osteo is stable but that was little reward for all the hard work I put into it. I was expecting a mild gain but no cigar on that one! 

 

You will notice that under the heading of "Causes for Secondary Low Bone Mass" they list the TSH.  Not sure what levels they consider causitive for losing bone mass but I think that one is overblown. I would think actual hormone levels would come more into play but what do I know?

 

Hope you find this article useful! 

 

 

[cahill]

Thank you Gemini

 

I have a lot of reading and research to do before I see my doc.

 

My DEXA  scan is next week and I will be very  interested in how  the score compares  to last time .

 

edit to add; I should mention that I have broken many bones in my adult life,,, any fall or bump could produce a broken bone . This leads me to question the " quality " of my bones .

[Gemini]

Oh, I get what you are saying.  Once you start to break bones easily, I think you have to take a second look at meds.  I haven't gotten there and I hope I do not.  But at least this article goes over the different meds and their side effects and overall usefulness so making a decision will be easier.  If it were me, I would be looking into ones that are given intravenously because all of the oral meds can cause irritation to the GI tract and we don't need any more of that!

 

Good luck!

[cahill]

Cyclinglady you may have been on to something ;

 

 

After doing some reading and research I have to wonder if the IV steroids that I had during /after my full knee replacement last August may have been enough to throw off the delicate balance I have been maintaining.

[cyclinglady]

I think that is a strong possibility. My MIL took steroids for MS. She fractured her wrists and hip (not at the same time) due to falling because of her gait. We blamed the steroids she took, but without them, she was often unable to walk especially due a flare-up. In retrospect, she could have had celiac disease as well. My husband has been gluten free for 14 years now per the poor advice of my allergist and his GP. Never officially tested and will not do a challenge. We assume he has celiac disease. (The kicker is that I was diagnosed.). We think she might have been affected as well.

I had thyroid flares at the time of my DX. I ran hyper and hypo which drove my doc nuts trying to find an appropriate thyroid replacement dosage. My last year of Perimenopause was occurring too. Things calmed down when I went gluten free. But the bone damage was done probably from a hyperthyroid and having celiac disease and a few months later -- fractures.

I am on a low carb high fat diet to stablize my blood sugar. I consume lots of cheese and yogurt. Before my celiac disease diagnosis, I could never eat dairy. So, I am no longer lactose intolerance or it has improved. I have yet to down a glass of milk. I still put Soymilk in my coffee! I am waiting to see in April (tree pollen) to see if my old casein allergy is gone. My siblings are waiting with baited breath as they have the same allergies. I am hoping that all this dairy will help my bones!

So, steroids have long term last effects. What am I saying? I forgot that my dad was just diagnosed with osteoporosis a few months ago. He takes steroids for his COPD and his skin is like tissue paper. My mom's bones are fine and both were smokers. So, steroids can have a huge impact! He has not been tested for celiac disease though.....even though I have it and his sister.

[cahill]

This is a major concern especially since I need to have the other knee done .My understanding is it is medically necessary to give me the steroids during /after the procedure ( something about an autoimmune sh*t storm  as my doc put it ,lol )   I am putting it off as long as I can but it will have to be done at some point in the near future. It is an issue I need to address with my doc

[gilligan]

I just saw a dr. about osteoporosis yesterday.  I don't remember my t-score, but it is 3 grades or levels from where it should be.  He gave me info on two treatments - Prolia, an ev six months shot, and Forteo, a daily shot.  After looking up many, many reviews, I'm scared of both treatments.  The side effects sounds worse than the actual problem.  I asked him about being diligent with supplements, diet, and evercise, and he said it won't impact the overall problem.  So depressing!  Have you been told the same thing?  Has anyone tried medications and given up on them?  I don't know what to do.  

[Gemini]

It would depend on your age and other factors as to whether you will be able to build good bone with natural methods only.  I have managed to stop the progression of osteo but have yet to reverse the T scores.  I do not weigh enough to do so on my own without effort on the exercise front.  Have you tried the diet, exercise and supplement routine yet?  Most doctors are negative about that anyway and want everyone to jump on meds but I am like you....not too crazy about that idea. I have had no fractures so feel comfortable not taking meds.  I would try the natural way first and only choose meds as a last ditch resort.  I am one of those people who always seem to have side effects from drugs so am very leery about anything like that.  The choices are pretty lousy, if you ask me.

[cahill]

I just saw a dr. about osteoporosis yesterday.  I don't remember my t-score, but it is 3 grades or levels from where it should be.  He gave me info on two treatments - Prolia, an ev six months shot, and Forteo, a daily shot.  After looking up many, many reviews, I'm scared of both treatments.  The side effects sounds worse than the actual problem.  I asked him about being diligent with supplements, diet, and evercise, and he said it won't impact the overall problem.  So depressing!  Have you been told the same thing?  Has anyone tried medications and given up on them?  I don't know what to do.  

gilligan, I have been told basically  the same thing ,, I honestly dont know what I am going to do .

 

I am considering the daily dose instead of the 6 month shot.  If I react to something I would rather it was out of my body  in a day or so not 6 months